The Tonic.

The 1^st of June through to the 7^th of June marks National volunteers week at the Muscular Dystrophy Campaign. All week people have received calls from the team, messages of thanks, gratitude and sheer amazement at the lengths people go to to help the charity.

I received my call from Sara Wilcox, it was humbling and appreciated. Now I want to tell you a little about why I do what I do…

Recently a good friend and colleague said to me “You know the best thing that happened to you was not being able to carry the Olympic torch, that rejection.”

Now that may sound a little harsh but I think she is probably right.

In May 2011 the Olympic committee was asking for stories from people and nominations for torch bearers, to carry the Olympic flame through your area because you had made a positive impact in some way. My wife, Michelle, had nominated me and I kept passing the several different stages of qualification until the very last day.

I was invited onto a local BBC radio station; I was told that I would be interviewed at home over the phone both on the breakfast show and the Drive time show at 17:35. The breakfast show was basically just an introduction about myself and my nomination but the station was hyped! They were very enthusiastic about people in the area that may get this opportunity which also rubbed off on me.

I went to work extremely positive and upbeat. I played Vangelis all day! I received an email to say that I would hear the outcome at 17:30, the decisive email then. As the afternoon wore on colleagues were excited and I was really getting wrapped up in the moment. Then I got the email… “There simply weren't enough slots for everyone who was nominated and unfortunately you have not been chosen to carry the Olympic Flame. With all best wishes for the future, Seb Coe” At the eleventh hour I had not made the grade oh and I was due to speak on the radio too.

I could hear the show live on air through my phone and as the travel news finished they came to me and asked about the outcome, as I announced that I had infact not made it and would not be carrying the torch I could immediately hear the DJ's tone of voice change and they went to someone else in another county that HAD got the torch… I could still hear the show live in my ear and I knew that I was that evenings chip paper. I had to tell all my family and friends that I was near but not close enough. Gutted.

My wife and my daughter, Lucie said that they was so proud of me that I’d got so far with it and that I’d go on to do other things, just as good. I was empty that night, extremely low. I’d got wrapped up and carried away with the situation but then the stories I heard of the succesful torch bearers were amazing and very worthy.

I woke up the next day and started writing, at first about football then about Muscular Dystrophy then a combination of the two! I kept writing, until this point I had no idea that I could write in a way that told a story. Also because of this came replies from people telling me that it was great to raise this awareness and to keep going, I’d also influenced a friend to run a sponsored event for the Muscular Dystrophy Campaign. Graham Cocker was to share his Just Giving page for two charities; he ran well and raised lots of money.

After this my brother, Andrew had announced that he would be running the 2013 London Marathon, and he did! I just kept writing.

Andrew, the Marathon Man

I then started to get involved with the charity. Volunteering for Marathons, speaking at muscle groups and lots more to keep raising awareness. I had become a trailblazer and attended Parliament to represent all disabled people. It was also at this point that I produced an article about PIP (Personal independence payments) this article went straight to the top and ended up in the lap of the Minister of disabled people. This article very nearly got me an interview with the appropriate person to talk about the benefit scheme that I did not agree with and to this day still do not agree with. I’m still waiting for that interview. I’m not going away.

Lucie and Tim

So as I pushed on with social media more friends and family were behind me and getting involved. Andrew kept running Marathons; My daughter Lucie did a Skydive along with her boyfriends dad, Tim. Family friends Mark Sammon, Michael and Marie Johnson also started running for the Campaign. An amazing friend called Jo Entwistle and fellow Leeds fan ran Leeds half Marathon. My sister, Claire, organised a fund raising party, my friend Paul Cable created my blog , our friends Dean and Karla were and are always there to lean on and many family and friends had started buying and wearing the charities orange wristbands. I also went on to meet great people like AlunWatson who introduced me to Powerchair football, Freya Levy who is a Paralympic basketball player and a now a friend, Ian Robinson who has a cool off road power chair and a very proud beard grower and other writers on social media like Michaela Hollywood and Brad Miller, very inspirational people.

So all these people were doing all these things and I thought it was my turn to step up to the plate. Stop writing and put my money where my mouth was. In 2013 I challenged myself to ‘Move a mile for Muscles’. To walk one mile and raise awareness and funds and I did too.

So this is what I do.

Do you want to know why? It’s because there is no cure for this condition, there is no medicine I can take and nothing to relieve my pain, apart from this.

Writing, volunteering, talking, attending events, using all kinds of social media and lots more is my medicine, this is my pill. This is my tonic.

So it’s on volunteers week that I thank everyone at the Muscular Dystrophy Campaign for all that you do to help me and my family, you are all amazing! As are all the people that I have mentioned above as well as all the precious sponsors.

I would like to say a special  thank you to Michelle for everything she does and puts up with and for always being there.

End of blog? Not quite.

In August again this year many people affected by Muscular Dystrophy will be ‘Moving a mile for Muscles’ all over the UK. I will be too, TWICE! This will be the biggest and hardest challenge of my life.
I would like to encourage an army of foot soldiers to join me too. Help me, Support me and the Campaign. 

As for Seb Coe, thank you. You have no idea who I am and how much you’ve helped me. Cheers.